Private Parts
As I was mentally preparing myself this morning for today’s stent insertion (which included a fair amount of leg-shaving and heel-moisturizing), I was struck by the irony of my repeated exposure to complete strangers.
I’ve always been a fairly (all right, extremely) physically shy person. Not that I won’t hang out in a bathing suit (tanning is more important than modesty), but for the most part, changing in locker rooms, getting nekkid for physicals, etc. have never been something I’m comfortable with. I’m definitely not the lady who leaps dripping out of the shower after her workout, toweling her hair and launching into conversation with her friend at the makeup counter, for instance.
So I can’t help but chuckle/wince/shudder at the amount of time I’ve spent completely bare in front of complete strangers over the last few years. It started with childbirth, certainly, but at least the L/D nurses closed the door of the bathroom while they helped me change after the process was over. I remember being prepped for my first surgery in 2006, feet in stirrups, gown at waist, while OR nurses, medical residents (some of them really cute guys) and assorted personnel kept coming into the room and introducing themselves to me. I finally said, “Is it just me, or is it a little drafty in here?” They got the point and grabbed a blanket.
But once you’ve been cut open from stem to sternum, there’s just no privacy any more. After my last big surgery in 2007, I remember the (delightful, sensitive, thoughtfuln’t) surgical residents popping into my room at 5:30 AM for rounds, cracking on the overhead klieg lights, ripping off my blankets and having a look-see at my incision before I had even opened my eyes. (I did NOT bake cookies for the surgical residents.)
And today, a cute man I’ve met with for approximately twenty minutes will be inserting a stent…well, you know…while I’m unconscious and naked from the waist down. Just another one of those things I have to let go…
These Boots Were Made for Kickin’ Cancer’s Ass
I bought ’em.
Thanks, everyone, for your support. I’m going in for my stent tomorrow afternoon (probably won’t wear the boots since I’ll be mostly in a super-sexy hospital johnny, freezing my butt off), but you bet they’re going to go with me to The Cancer Factory as soon as they arrive in the mail. Hopefully by Monday, but I’m not holding my breath. GO, UPS!!
Creeping In
Wow, this cancer is serious business. By my calculations I’ve been off of chemo for just three weeks, but I can feel things growing in there. A knot of lymph nodes in my neck that had gotten smaller during chemo is getting bigger again, and is now, literally, a pain in my neck. The pelvic tumors, which were actually responding to the chemo at first, are growing again and pushing on my left sciatic nerve. And, most disconcertingly, I’m finally understanding that classic ovarian-cancer symptom of “a feeling of fullness or inability to eat” — most of the time, it feels like my dinner consisted of six or eight large bricks. (Don’t worry; I’m compensating for the lost calories with french vanilla ice cream.)
So, is this the part where I start complaining? Maybe. I’m trying to keep my mouth shut around the house, because I know how upset it makes certain-members-of-my-family-who-shall-remain-nameless. And we’re all trying to keep our eyes on the prize: I’ll start this trial next week and the drug will do a bang-up job of knocking back the cancer’s growth and all my symptoms will fade.
I must admit, though, the cynic in me is starting to get up a good head of steam. The hope is still there, the belief in miracles, the willingness to place my life (again) in the hands of one of the most capable medical teams in the country. But combined with the respiratory stuff that’s been going on since the end of September, these new symptoms are stark reminders of just how close to the edge I’m riding these days.
In August, I asked my oncologist (one of the foremost experts in the field) to be honest with me. I said, “I know doctors don’t like to make prognoses, and I promise I won’t hold you to anything you say, but you have a lot of expertise with this disease, and I need to know. If I stopped treatment today, how long would I have?” (A part of me couldn’t believe I was asking this; I have spent so much of this illness focused on the fact that I will get better that even broaching the question of not was a shock.) She told me that I’d have about six good months, and around a year altogether. At the time, I thought, “Well, thank heaven I’m not stopping treatment. I need WAY more than a year.”
Only none of the damn treatments have worked. Do I have six good months left? The cynic figures I’d better really enjoy Christmas this month. Like, REALLY enjoy it. And then the hope side chimes in, “People have been sicker than you are now and recovered. Miracles happen every day.” Yeah, but they don’t, too. People who were diagnosed after I was are already dead. Maybe I’ve already used my miracles — IP chemo, my crazy HIPEC surgery, my previously stellar fitness level. That 35% five-year statistic wasn’t threatening to me a bit until about three weeks ago. Now I’m wondering about May. Whether I should have had a 39th birthday party. Whether it’s worth buying a new pair of flat-heeled black boots.
Though I’ve been sick for four and a half years, aside from acute times like post-surgically or during chemo, I’ve been able to live a relatively normal life. But now, I can’t ignore it anymore. Now, there’s always something.
photo credit here.
Requested Reading List
I’m afraid I’m going to fail to fulfill a promise I made a few years ago. When my second son was born, one day the cat came to me and said (I’m paraphrasing), “Why do you keep bringing these men into the house? When will we ever have the chance to be alone together in the sunshine with all these boys around, and their hammering, running, zooming, and eating?” I told her, “Elly, one day you and I will have a girl room, with a chintz-covered chaise longue, late-afternoon sunshine, a mohair-y throw blanket, a pot of tea, and a stack of great books. We’ll spend weekends in there, dozing and reading. I promise.”
Well, the Girl Room hasn’t materialized yet, and unless they’re planning a big Christmas surprise for me, it probably won’t happen. But I can still lie around with a stack of books like it’s my job, and for this Cinderelly is truly grateful.
What I’m having trouble with is: what should I read? When I hit the bookstore, I look for interesting covers or for books I’ve heard mentioned by other people. Sometimes I hit; sometimes I miss. Whenever I go to the library, I wander around aimlessly, looking at covers and pulling out books I haven’t read by authors I already know. But I’m sure there are people (other than librarians and critics) who know exactly what is good, or a classic must-read, or not-just-chick-lit-but-good-chick-lit. Are they you?
If you had a year and wanted to make sure you read all the important stuff, including classics and contemporary literature (although maybe not so much poetry; sorry, Amy), what would you read? Tell me, tell me — there’s still time to put together an Amazon list…
Up In the Air
With apologies to Mr. Clooney (and if he’d like to drop by, I’d be happy to deliver them in person), this week has been the definition of “up in the air”. I’ve been to The Cancer Factory three times looking for a plan, and each visit has given a teensy glimpse of what my upcoming schedule could be, but also another question or two that need answering before any decisions can be made.
So if there’s any truth to that “chronic-stress-causes-cancer” thing, I’m fooked.
Today’s downtown journey revealed another medical truth: no matter how much iron you consume the night before, you cannot pass a failing hemoglobin test. (Although if you’re looking for an excuse to eat grilled grass-fed buffalo rib-eye and sautéed spinach with pancetta, garlic and shallots, which I HIGHLY recommend, I won’t blow your cover.)
Wednesday I met with the urologist, who aside from being a nice guy, said he could fit me into his schedule for my left stent any time, all I had to do was figure out when the Phase I gang wanted me to have it done and call his nurse to book it. But I couldn’t get an answer from the Phase I gang until my hemoglobin was re-tested; 8.9 was not the 9.0 the “sponsor” (Pfizer) needs it to be for me to start the trial.
Yesterday, despite the fact that I hadn’t called to schedule it, I got messages during my nap from: the urologist’s office, the anesthesiologist’s office, and the admissions department at New England Baptist Hospital (where the procedure would be done) all telling me that I was to arrive this morning at 10:30 for my stent insertion. So I had to scramble and check with Phase I – no, they wanted me to get a transfusion (for my pitiful hemoglobin) before I had the stent placed, and I couldn’t start the trial within two weeks of a transfusion, so “no-go” with the stent procedure for today.
TODAY, I had a re-check of the hemoglobin, in hopes that my yoga, steak and spinach had helped it rebound from chemo, but no luck. Still 8.9. SCRAMBLE again to find Mr. W (and get him to answer his phone) to pick up the boys from school this afternoon, so I can get a two-hour transfusion (starting at 3:00 PM, yaaaaaawn), so I can start the trial two weeks from Monday. Which, in case no one has noticed, is the 21st of December. I’m sure I’ll have TONS of time that week to be down here three days in a row.
What I still don’t know is when I’ll be having my stent placed, but now that I’ll have a transfusion on board, I hope they can fit me in next week. But not too early, so I don’t miss Mr. W’s company Christmas Party, the only one (pathetic!) we’re scheduled for this month. And not Wednesday, ’cause Mr. W’s in an off-site meeting all day. Guess it’ll be Thursday or Friday… maybe?
It’s still up in the air.
Clooney? On second thought, I’ll meet you in Como.
Hopefully Elisabetta will be out of town.
Photo credit here.
Let The Wild Goose Chase Begin
I'm comin' for ya, dude.
Hey! How was your Thanksgiving?
Really? That sounds nice… oh, mine? It was lovely, thanks. Yeah, everyone’s still speaking to each other… yep, kids got along and no one threw mashed potatoes. We missed the traffic by coming back Saturday night. So great to see everyone, but nice to be home.
What?
Oh, the scan results, right…
Um.
Yeah, those didn’t come out like we hoped. Like, really not like we hoped. Lungs: measurably worse. Pelvic tumors: growing. Hydronephrosis (back-up in my kidneys) worse. New lesions in sacrum and pelvic bones.
You see why I’ve been avoiding you.
On the “Action Items” side of the page, however, we have now two solid Phase I trial options (thank you, cancer research funding), one of which I’ll be starting next Wednesday. Pending my visit with the PPMD (urologist) tomorrow and scheduling my stents. Yes, lucky me, I’ll be getting ureter stents again so I can pee. (Jeez, now I’m not only like an old woman but an old man, too?) The study (Option #1) is an oral drug, taken (yea!!!) with food daily, so no fasting, no infusions (looking hard for the silver lining)…
As opposed to the study drug from last summer, this one attacks signaling proteins on multiple pathways at the same time, so there’s a higher chance of success. The study worked well for an ovarian patient (she was on it for ten months) at The Cancer Factory already, although eventually she progressed and has now moved on to another study (my Option #2). So there’s a reasonable hope that this will give me some more time.
Another bonus is that Option #2 has openings forecast for a few months yet, so if Option #1 doesn’t show results, I can slip right on to Option #2 after about three months or so.
What? Well, we don’t know what else is out there yet. That’s the problem with studies. There are new ones coming down the pike all the time, but we can’t really predict what or when.
So, yeah. That’s where we are today. No, I’m handling it okay. (Just don’t talk about the kids.) I haven’t started buying plane tickets yet, but I’ve stopped shopping for high-end, life-long couture, since I’m not sure I’ll get my money’s worth out of it. And no, I will NOT bequeath it to you new-with-tags, so quit asking.
God bless black humor.
Fine, Thank You
As I climb back out of the chemo pit I fell into last Tuesday, I am greeted by Christopher Hitchens’ latest brilliant column in Vanity Fair, on Cancer Etiquette. Now, as anyone who has personally encountered The Big C will understand, there is a whole new book of rules that apply to those of us on the ugly side of the fence. And, as Hitch so brilliantly reminds us, the proper response to “How are you?” is NOT a lengthy discussion of your latest symptoms, scan results, and tumor diameters.
Conversely, the asker, when returned with a simple, “Fine, thanks, and you?” should NOT, as happens so frequently, re-state, “Yes, but how ARE you?” There may be things the patient doesn’t want to talk about. Maybe she’s had a long day of explaining to everyone how she’s really doing, and is sick of it. Maybe the news is bad and she doesn’t want to get into it right now. The sharing of bad news is particularly difficult, as the toughest part for me of having Stage IV cancer (and, as Hitch notes, the thing about Stage IV is that there is no Stage V) is having to explain to people what’s really going on inside my body, how dire it is, and watching and dealing with their reactions. Because, frankly, I’m not very comfortable with my own reactions to the situation, and I’m not exactly equipped with the emotional fortitude to comfort you when you hear my news. Hence the “No-Cry” zone I’ve erected around me since 2006; if you lose it, I’m going down, too.
On the flip side, there are those who feel it will be encouraging to share with the patient the story of another person they’ve known, personally or, my favorite, “my sister’s best-friend’s boyfriend’s cousin’s mom” who had the same, or perhaps completely different, cancer as I have, and who took every treatment plus radiation and is now hiking Amazonia/lived thirty years past doctors’ expectations/died a horrible, lengthy and agonizing death in sub-standard hospice care. Whether uplifting or depressing, these stories leave the patient wondering: 1) Is she telling me this story to make me feel better? 2) Is she telling me I’m going to die the same way? And, as Hitch found out, 3) What the hell do I say next? Frankly, we can all do without (see para. 2) having to come up with conversational tidbits to make you feel better about your story/aunt/distant acquaintance and the outcome of their cancer.
You see now why my standard response to the question in question has become, “Upright and conscious.” For those not in the know, my answer is funny, just another frazzled, sleep-deprived mom-on-the-go; for those who are well-versed with my sitch, it’s an honest assessment of my day, at least that part of it that I’m in right now. “Fine, thank you” just leaves too many open ends.
Instead of trying to relate to your friendly neighborhood cancer patient, to make her see how closely you understand what she’s going through (because, unless you’ve been the one holding her hair back for her in front of the throne and massaging her neuropathic feet, you can’t), just ask her if she’d like some company. Bring her a coffee, or take her out for one. Talk about the weather, your kids’ soccer games last week, how annoyed you are by Christmas commercials on November 1. If she wants to talk about cancer, she’ll be more likely to when she knows you’re there for the long haul than just the quick update.
Gee, chemo seems to make me a little bitchy. Aren’t you glad I’m back?
Random Realizations
With the exception of catching a cold, it’s been a fantastic week. Fun things to do, plenty of excitement and opportunities to wear high heels. And along with my trend of expanding wisdom with increasing age, I thought I’d share some of the things I’ve discovered over the past seven days. Maybe some of them will be helpful.
- Birthdays are awesome, especially when your kids make you cards.
- With chocolate inside.
- It is possible to survive a week without diet Coke.
- When staying in a chic hotel with exciting on-site nightlife, you have to expect drunken hotel guests.
- Who are incapable of moderating their voices in quiet hallways.
- At 1:25, 1:54, 2:17 and 3:20 am.
- While lying awake silently cursing rude hotel guests, it is possible to forget all semblance of manners or empathy or respect for human life.
- Children get tired-and-cranky exponentially faster when playing at other children’s houses.
- A good playdate can last for eighteen hours, but requires devoted host parents. (XOXO)
- The best possible time to run into people from your past, say, college, is when you are decked to the nines in an expensive dress, killer shoes, hip jewels, and freshly-straightened hair and out for a date with your cutie-patootie hubs at The Four Seasons.
- No matter where you order it, shellfish-over-pasta is just shellfish-over-pasta. Lesson learned.
- However, it is possible to do some very exciting things the next morning with french toast.
- It is possible to still have things to talk with one’s husband about for nearly a whole day, even after seventeen years.
- Chic young things at swanky, hip bars in boutique hotels spend too much time on their cell phones texting people who are elsewhere and not enough time enjoying their surroundings.
- Although they seem to enjoy their fifteen-dollar vodka-and-tonics plenty.
- Thirty-nine and cancer-ridden means that four cocktails over the course of an evening, even with food, will result in a hangover.
- Irrespective of the quantity of water consumed during the same evening.
- Hangovers are quickly dispatched while lying in a pouffy hotel bed watching TV and eating salt-water taffy for breakfast.
- Coughing at night is more annoying than drunken hotel guests outside your room.
- Divorce can be avoided by sending the coughing party (me) to sleep in the guest room.
- All drivers who are not me are complete and utter morons.
- Especially when I’m running late.
I hope I have enlightened you with some of my new old-woman wisdom. I’m home from chemo and off for my daily kip. If you need me, I’ll be in my office.
I Love Birthdays
Isn’t it sad how most women fear getting older? How much money we spend on facial treatments, personal trainers, Lycra undergarments, and hair dye to avoid the appearance of aging? Like the bimbos on Jersey Shore are really having any more fun than actual grown-ups.
Today is my 39th birthday. If you’d asked me three years ago whether I’d see 39, I might have said no. And I know there are a lot of people out there who will quake at the impending doom of the big four-oh, worrying that it symbolizes the fading of youth, the approach of pop-culture irrelevance, the relegation to “old-person” status. (Okay, maybe not Dara Torres.)
Not me. I’m thrilled to be having a birthday at all. And if I get the chance to go grey, to get (more) wrinkly, I’ll be excited about it. Not just because it’ll save me a fortune in blonde highlights, but because it will advertise my success. It will broadcast the triumph of will, love, modern medicine and good nutrition over the evil cancer monster. It will announce to the world that I am more interesting than I was at 25, more complex, a better friend, partner, and parent. I will have wisdom to share, stories to tell, funnier jokes. (I’m willing to let the bikini go for funnier jokes.)
I know I come back to this analogy frequently, but I feel like aging adds more and more intricate pieces to the mosaic image that is my life. The pixels get smaller, the details crisper, the image sharper. More interesting.
Old people are cool. Bring it on.
I hope I'll look like this.
Speak Your Piece
I’m sure your inbox has been as crowded as mine, over the past six weeks, with emails from senators, the veep, even Barry O. himself, exhorting you to cast your vote this way or that, choose this candidate over that one, save our country from certain destruction at the hands of [insert opposing political party name here].
So I’ll keep this brief: make sure you vote today, and not just for the party you like best but for the candidates who will do the best job. And I don’t need to remind you of the importance of thinking carefully about the recent health-care legislation and its potential benefits for the illin’est of us, in terms of lifetime healthcare limits, pre-existing conditions, and coverage for the young adults under their parents’ policies.
Okay, I’ll get off the soapbox now. The most important point to remember is: if you don’t vote, you can’t bitch about them later.
Photo courtesy.
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
The Carcinista 
